Losing my sight

I often get asked “What can you see?” It’s a hard question as I forgot what you can see, but my closest comparison would be when you look through binoculars before you put them in focus, when it’s just colours and shapes and no detail.

There are days when it doesnf’t bother me and life just goes by without me really thinking about it. There are other days when things are tough. The difficult thing about having a degenerative condition is that you can’t ever get used to it because each time you get comfortable, it worsens and there is more you can’t see.

The reality of realising there is something I can nolonger see for myself can, at  times, be oppressive. Last week I realised I can’t see my fingernails clearly anymore. Until that moment, I have been able to see them if I move them to just in front of my eyes, but not any more. I have spent the last week peeking at them in every light I can imagine to see if it helps, and sometimes, first thing in the morning before my eyes get at all tired, I can see a bit better. But as I sit here and type, and pause to look at them, they are blurry and like every other similar realisation before it, it hurts.

Previous moments like it are burned in my memory- the first time I couldn’t recognise my husband across the road,  when I could nolonger see printed books, not recognising my best friend stood on the doorstep in front of me, not being able to spot myself in a mirror at an exercise class…….all moments where I could have run for the hills to escape the reality I face. But this new time, of not seeing my own body is gut wrenching. I haven’t been able to see my toes for a while, somehow I feel more indignant about my fingers!

So when these moments come, and come they will, I have choices.  Brushing things under the carpet doesn’t achieve anything,so recognising it, talking about it, writing about it help to acknowledge it as truth. Then it’s time to take a deep breath and work out the practical implications. This time round, it’s time to start getting my nails done, so at least I can look at myself and see somethings colourful, so I’ll get that booked in. I’m also looking in to some computer packages to help me with my work as my eyes have found all the computer work I do hard going, which I struggle to admit but work has been really supportive, as they always have been.

My husband has been great too, in the last couple of weeks alone I’ve fallen, broken a light, not noticed stains on clothing and spoken to staff at work thinking they were students, all frustrating, embarrassing and confidence knocking. Si has hugged me, laughed at me and cooed at the scabs on my knees with the patience of a saint! But then he’s refused to let me wallow in self pity, pushed me to work and sent me texts telling me I can do it!

So the choices I make are to keep going, to spend this half-term week recharging my batteries and reorganising myself so I return to school full of optimism that I can and will be fine. I’m on a mission to get my life organised so I can find things better and keep on top of things more easily, which has been an ongoing project for as long as I can remember… but as my sight worsens, it takes on a new importance and my drive to succeed becomes greater.

 

 

 

 

How to be an amazing friend to someone with a disability

I am blessed to have some amazing people round me. They have kept me sane, encouraged me, laughed both at and with me and wiped away more tears than I can remember. So, what do they do which has made such a difference?

• They know my needs, my best friend Karen is my ADOL (audio-description-on-legs!). She knows what I can and can’t see because she’s asked, watched and checked and now she automatically starts telling me what is going on. from describing friends wedding dresses as they’ve walked down the isle to reading menus to me, it’s done without fuss and often in good humour.

• They encourage me.  They’ve seen me fall and stay at home reluctant to go out and they’ve pulled me back together and encouraged me to try again. When my Guide Dog retired they were there cheering me on to get out and about by myself. They knew what I needed and encouraged then gently pushed me to do what I needed to do to regain my confidence.
  

  

  
   

• They laugh at me: they don’t treat me like a china doll, but allow me to make mistakes because they know we’ll be crying with laughter when we recall it later on. One favourite memory is when Karen stood behind me in a chemist giggling as I lifted a product from a shelf to my eyes so I could see what it was- a cream for men which I certainly would never read!  Her quiet comment as I did so was , “can’t wait to see your face when you realise what you’ve just picked up!!” My friend Tess similarly keeps my feet on the ground by laughing at me whenever people tell me how well I manage. With a dead-pan face she’ll agree with them and start conversations about my amazingness! She does it on Facebook too, it keeps my feet on the ground and stops me ever feeling sorry for myself

• They offer practical help when I need it: whether it’s brushing up shattered glass that I can’t see , giving me lifts to places or mending something for me, they’re all on hand, keen to help and if there’s somewhere I want to go or something I’d like to do, they’re on hand to join in.

• They let me be: sometimes it just hurts. I try to focus on what i am blessed by, but sometimes crying and acknowledging how hard things are is simply being honest. My friends who let me cry without letting me wallow, who don’t try to pretend everything’s fine  when it isn’t and who just let me be me are precious and I wouldn’t be without them

• They get behind me and champion my corner. This year, two good friends are running the marathon to raise money for Guide Dogs. I couldn’t be more grateful as it is a valuable and life changing cause. The hours of toil they are putting in is immense and I am in awe of them. Equally when I’ve taken a knock from being refused entry to somewhere on account of a restaurant refusing my Guide Dog (and it does happen), they voice their support, or stand with with me as I explain, or when they see I don’t feel confident, step up and speak for me. All of which I appreciate especially when it’s done instinctively knowing which option I’d prefer.
  

  
  Jenny with new Guide Dog Gus and Al with retired Isaac

• They love my dog: first with Isaac and now with Gus, my friends have been incredibly supportive, from trips to the vet to finding appropriate places to go for outings to having a basket under the stairs full of dog blankets, toys and towels, they’ve all shown us more consideration than I could have asked for.

• Finally, they trust me and trust my judgement of what I can and can’t do. I don’t have my own children, but many of my good friends do and they have trusted me with theirs and let me take them out by myself, which is such a huge confidence booster. I’m honoured to be such a big part in their lives and these beauties are equally as giving as their mums! They tell me what’s going on, read bus numbers and signs to me and never grumble when I ask them to pick out another story book as I can’t read the one they’ve chosen.

  

  Fun in the park: enjoying the sunshine whilst spending time with my friend’s girls.

I’m not rose-tinted, and along the way I’ve learnt some lessons, but good friends like these are like gold-dust and I am super-blessed.

To to donate to either Al or Jenny’s marathon funds for Guide Dogs, click here:

Al’s Marathon Madness 

Jenny’s Guide Dog London Marathon